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Letter to Larry

2/25/2017

If you have read my blog in the past you already know my story. In fact to some you know it Ad Nauseam (to a sickening or excessive degree). At one time I had titled a series of blog entries “My Incredible Story”. To some it all may not have seemed all that incredible but I felt that it was interesting how one simple occurrence led a series of events that would change my life in a meaningful way. The story went something like as follows:

We were at a local mall visiting a Christian bookstore and I noticed a book that was on display that was called SEAL of God. It was written by a man named Chad Williams who became a Navy SEAL and then would leave the military to become an evangelist after serving overseas. It was a great book and I spent an entire weekend reading it. I couldn't put it down and when I was finished, it left me wanting more. We were at our local super store on a different day and I noticed a book called Lone Survivor by Marcus Luttrell. The book was absolutely gripping and I couldn't put that one down either.

On yet another day, we were at Benjamin's favorite mall and at his favorite bookstore. While there, I was looking in the military section for my next read and I saw a book titled FEARLESS. It was about a Navy SEAL as well so I flipped the book over to look at the back cover. This revealed that Adam Brown of Hot Springs Arkansas, who the book was written about, had some very serious problems. He would overcome them and would go on to become a SEAL only to be killed in action. I can't remember exactly what I was thinking at the time but it was something along the lines that his story ended in defeat. I wanted to read about a person returning from battle in victory.

I put the book back on the shelf and it is possible that I might never have picked FEARLESS back up ever again. Wow! I put it back and would end up buying Marcus Luttrell's second book which was call Service. It continued to tell Marcus' story and would turn out to be another great read. By this time, my reading was starting to be a habit and I thought that purchasing a Kindle was a good idea. I approached my my sweet wife about it (you know it is really women that rule the world) and she said that would be a good idea. After receiving my Kindle, I would go on to read books like The Outlaw Platoon by Sean Parnell. Another great read! I had read maybe one other book after that and I started thinking that it was time to consider reading FEARLESS. I downloaded it onto my Kindle and began my little journey. I was instantly glued to this book as I read what I consider to be one of the most incredible life stories ever told.

The things that Adam overcame just to get into the SEALs was amazing enough. However, the injuries that he would overcome to not only stay in the military but also to make it into SEAL Team Six. They would be unbelievable if not true and they put Adam in a class all by himself. Another thing that connected me to the book was the details of the type of man that Adam was and also the type of family that he came from. I could go on forever but I would just like to make the point that this book stands out as being in a class by itself and it is very possible that I may have never read it. I have read it five times and I know that others have read it more times than that. My only thought after reading it for the first time was how do I get a hold of Adam's family to thank them!

The marker which would become the center piece of Fearless Rock.

So this is where it becomes even more incredible to me. It was through a series of Facebook pages that I would both learn about an underwater memorial created to honor Adam and also to learn about a princess named Ali. If you have been reading along, you already know many of the details. I have talked about diving the memorial and last week I talked about meeting Ali. Upon our return from our trip to Hot Springs, I was asked by the pastor of the church we attend to send him an email. In it he wanted me to detail what we had experienced on the trip. I ran across it the other day thanks to a friend named Sue! So I thought that it would be kind of neat to share it along with many of the pictures that I took on the trip. Wow, it has been almost three years now but the entire experience has had a big impact on my life.

So as some might find it unfair to make a person sit and watch their families home movies, you might find this equally unfair. I hope not though. I'll italicize the content of the email and change the font color while adding other details. Hopefully this will not make you nauseous.

Hi Larry!

Sorry it has taken me so long to get back to you. Ten hour work days do not leave me with a lot of spare time.
As I am sure you are aware, I am a huge fan of our military and especially those who serve in the special forces. I have now read several books about those who have sacrificed to serve in these latest conflicts. There are many amazing stories, but none greater than that of Adam Brown from Hot Springs, Arkansas. The person that he was and the things he overcame to serve at the very tip of the spear, is nothing short of incredible.

It was through Adam’s Facebook page R.I.P. Adam L. Brown (administered through his wife Kelley) that I learned about an underwater memorial called Fearless Rock that was being built by a gentleman named Will Stevens. The name of the FB page for the memorial is called: Fearless Rock – the Adam Brown Underwater Memorial.

I have been as big of a supporter as I could be of the memorial long distance and became pretty good friends with Will, its founder. I even went as far as to use the dive patch of the memorial as inspiration for a tattoo that I had done on my right arm. Will Steven’s presented me with the first Navy flag that was flown at the memorial and I had it framed. It hangs on the wall in my bedroom and is a priceless possession.

Us with Ali at Applebee's in Hot Springs. Photo taken by Donya.

So I got the idea to take diving lessons so that I could go see the memorial for myself, and to meet those that were involved with it. But there is a little more to the story.

Enter in Ali Vise of Ali’s Angels and her wonderful family. Ali, which is short for A”lice, was diagnosed with Infantile Batten Disease, at age 4. There is no cure for Batten Disease and it is always fatal. Doctors said that Ali would not make it past age 11. In fact she just passed away recently at age 7. Part of our going at the time we did was meeting Ali and her family before it was too late. I failed to mention that Ali and her mom were featured on the Fearless Rock FB page and that is how I became aware of her situation. I sent her mom a picture of our Benjamin and that is how we became friends. We have been financial donors to Ali’s cause in as big of a way as were able and have immersed ourselves in prayer for her and her family. As a result, our families have bonded. In fact Ali’s mom and grandmother are talking about coming to visit sometime. I would consider this a great privilege. You see the Ali’s Angels FB page has received 134 thousand ‘Likes’. Regardless of that, we have grown to love this family.
Anyway, I am including in this e-mail a photo album and a written tribute for Ali that I posted on Facebook. Please take a look. Seeing this much photographed little princess and her family in person was an incredible privilege.

The trip lasted 4 days. We flew there on Thursday and returned the following Monday. It was a whirlwind trip. Friday we were able to meet Ali, her mother Donya, and, and Grandmother Doris (or as she is referred to lovingly, Nini Cat. Their last name is Catlett) for lunch at Applebee’s. This was a real treat for sure!
Saturday was dive day. Will Steven’s picked me up at the motel with all my dive gear in hand. He first took me to Adam’s high school, Lake Hamilton. We got onto the football field where Adam played. This was so cool!

Then we went to Adam’s grave site. There is a very interesting story about his head stone in the book. Being able to see this was so special to me, a very emotional time. Next it was off to dive the memorial. I had a great time of conversation with Will and he also presented me with a Fearless Rock Dive Team survival strap. I wear it proudly!

Diving the memorial was so spectacular. I had seen countless pictures of it but there is nothing like being there. The effect of the magnification by the water is something that is not easily captured on film. To see it in person and actually lay my hands on it was an experience I will never forget.

After diving, we went to lunch at Stubby’s BBQ in Hot Springs. This place is mentioned in the book. Adam worked there when he was down and out. It is also the only place where Will Stevens crossed paths with Adam Brown. Another neat story that we don’t have time for. I had lunch with Brick and Jennifer Smith, two big time members of the dive team.

Let me interrupt the content of the email to mention how sad that I am to know of the passing of Brick Smith. You see Brick left us due to a Sky Diving accident just prior to this blog entry. Brick was an outstanding individual that gave himself to others on a daily basis. He was a nurse by profession and was also a type I diabetic. I am type II. Brick worked, as a professional, with other diabetics in teaching them how to cope with the disease. He was well respected by many. Brick was an experienced scuba diver who had logged well in excess of 500 dives. Brick became a fitness buff and spurred on his fellow Gym Rats to excel in that area as well. He was a member of the Fearless Rock dive team and was a founding member. He helped Will Stevens build and maintain the memorial. Brick was an all around great guy and a very good and active father to his daughter Saxon. Although he had split with his wife Jennifer since the time we met, I know that Jennifer has to be devastated by the news of his passing. He most certainly is greatly missed by his daughter and Will Stevens, as well as, the other members of the dive team. Brick lived life to the Max and went out doing something he really enjoyed. Until we meet again sir, it was nice to spend time with you!

We also met up with Rose Anne Davis who is a really neat lady who I met on Facebook as well. We attended church with Rose Anne on Sunday and also went to dinner with her on Saturday night. So Saturday was very full. Sunday after church, we went to lunch with Rose Anne and one of her friends.

Then we were off to spend more time with Donya and "Nini Cat" Catlett. We spent time walking around the old downtown area of Hot Springs and went over some of the history.
So it was a packed weekend. One I will never forget. I’ll be going back, hopefully this March. They have a 5K run/walk in honor of Adam every year at that time. Lord willing, I’ll be there. This whole thing has been an incredible, life changing occurrence for me.

As I have said in prior blog entries, I feel that it was through this entire experience that I had gotten off the couch and stepped outside the box of life.
The steady drip, drip, drip of normal domestic life was all of a sudden interrupted without me realizing it. It is always interesting how one event can lead to another and that certainly has been the case for me.

I have the very utmost respect for the men and women who have put on a uniform in defense of our country. I especially love reading the stories of those who serve in the special operations community. The amount of skill and training coupled with the danger and sacrifice is unparalleled by any standard. I can't get enough.
Most of my time on active duty was spent in the southern United States and I grew to love the culture down there. I love to go there every chance that I get. To be in Adam's hometown, seeing the sights and experience everything that was brought out in FEARLESS was well worth the trip. I will never forget that extended weekend.

When it comes to scuba diving, it is something that I had never considered doing. The whole thing seemed to be kind of creepy to me and then there are the SHARKS! But I did it and never would have if not for Adam, Will, and Fearless Rock.

And then there are the kids. My heart! I have grown to love the children, and their families, who cope with rare and incurable diseases. My desire is that much of my blogging in the future will talk about the trials that these people face in their lives. This all started with a little girl named Ali who would lead me to follow many others. My activities on social media and my blogging revolve, in large part, around spreading awareness, as well as, bringing honor and comfort to the families of these children. It all began with a Princess named A"Lice Brionne. I have met so many neat people.
That is why I thought that the entire thing and how it all came together was incredible and it all started with a trip to the mall.

“I have an incredible story to tell. It’s not that I have done anything incredible or that I possess any attributes that one might consider to be incredible (I am really pretty regular). Rather, it is that I have had some life changing incredible things happen to me in the last couple of years. It is possible that it all may have never happened and it is interesting how it did. At least it is interesting to me.”

None like her, although there are many others.

Adam Brown - The Tender Warrior!

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My kind of Royalty

2/18/2017

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The Royal Family.

Who are my celebrities? Why? What is important to me? These are good questions. Do you act for a living. That's great! I watch an occasional movie when it is one that interests me. How about professional athletes? I love watching sports and admire athletic ability. If it was easy, anyone could do it. Right? How about a famous musician? Well I truly love good music. I love to sing. Just don't turn the volume on the radio down too low. I am not a soloist. How about a politician? Are you one of those? Well, I vote but lets not go there right now. Are you a member or the British Monarchy? Well that's really cool stuff. Lots of history and tradition there. Hey! I wonder if I am the descendant of any famous Spaniards? Naw, probably not.

The people that really and truly get my attention are those who battle through hardship and adversity. They can be those who have put themselves in harms way like the members of the military have. Or they can just be someone that has endured a difficult time in order to rise above their circumstances. These days, my focus has shifted to the little warriors and their families that battle through rare childhood diseases. These kids and their families have become some of my heroes! There are a few childhood diseases that have my attention but the one that has received most of it to this point is Batten Disease.

My Big Day!

In the last two weeks the small and tightly knit Batten community has lost six of the most beautiful children that you will ever see. The love and respect that I have for these people just intensifies with each new story that I read about. There is nothing that I can possibly do to take away the anguish that they as parents face as they say goodbye to their most perfect little gifts from above.
To you, families, those of us on the outside that follow you are with you although there is no way that we can take away the grief that you are experiencing. I am so incredibly sorry that you have to travel down this road.

Kids with Battens are referred to as Princesses and Princes' because they are beautiful. Only the most hardened of individuals can look at a young child and not feel something as they consider their flawless and pristine little features. These kids, especially, deserve special attention because of all they will endure in their little lives. Their resilience will be on full display as they go through the stages of that which we wish did not exist. They have become royalty to me.

If you have been reading my blog you already know that me and my little family traveled from Oregon to the state of Arkansas in 2014. You know that I went to
honor an American Military Warrior named Adam Brown but also to meet a warrior princess named Ali. A"Lice Brionne Vise of Ali's Angels is, “the one who made me aware and who changed my way of thinking.” I hope that you can see that the entire event has left a lasting impression on me, because it most certainly has.
It was just a single lunch date with Donya Catlett, Ali, and Ali's grandmother, who is lovingly known as Nini Cat. However, it would become a very special event for us. Ali was the most elegant looking little person I have ever seen. As we sat down, Donya rolled Ali’s chair up right next to me. I don’t know how to say this tactfully, so I’ll just blurt it out. I couldn’t keep my hands off of her. Donya understood the moment completely and told me as much at the time.
Have you ever considered the power of human touch? Whether we are talking about the sincerest of handshakes or the warmest embrace. Or maybe just to put your hand on someone’s shoulder to let them know that you care. You have to know that this was an incredible experience for me.
It is one thing to tell a person from a great distance that you love them and that you are praying for them. It is another thing to travel so far and to get the chance to do so in person. It was so easy to see that Ali was loved and cared for. She was dressed to perfection. So elegant in appearance. I had seen so many pictures and it was just amazing to be there right next to her.
I got a chance to see Ali one more time the following Sunday as Donya was dropping her off at Ali’s dad’s house. While they were going over instructions for Ali’s care, I was rubbing her little back and telling her how much I loved her. Then, sadly, it was time to leave. I have had several people tell me that I was lucky to get to meet Ali. I know that there are so many people locally that love her, and of course she has a huge following through Facebook.
It would only be about three short months until Angel Ali would gain her wings. The grief that so many felt was overshadowed only by Donya’s own grief, as well as, the grief of her entire family. Extreme Sadness for all of Ali Nation. Meeting Ali was an experience that I will never forget. It left us feeling like we were in the presence of royalty. In fact, I think that we were!

Mike and Lucy - The Royal Couple.

And now let me tell you about an entire family that has become royalty to me.
There have been several famous couples that have been showcased by the Royal Family over the years. In my humble opinion there are none that have any thing appearance wise on the couple that is Mike Carroll and Lucy Faith. They are both very attractive people. When an attractive couple decides to have a family that usually means that their children will be attractive as well. It is easy to see that is in fact the case. Ollie and Amelia and their other two boys are all very nice looking indeed. Adorable is more the word that I think of when looking at all the pics. Prince Ollie and Princess Amelia are among the many children that have become the face of Batten Disease.
And so, you have a very attractive couple from England who have attractive children, one being a prince and one a princess. I can tell that they are not rich but they are not poor either. They are certainly rich when it comes to traditional emphasis on family and quality of lifestyle.
I had mentioned the little slogans that I had naturally developed for some of the kids that I have followed in my previous blog entry: Where as in Ali's case, There is “none like her although there are many others.” For Kane, “he is adorable. Is he not? He will never be forgotten.” And, “Nora is beautiful and I know just where she is.” Then, when it comes to the couple that is Mike and Lucy plus their four attractive children, one a prince and one a princess, they qualify as being my kind of royalty. I am calling them "My Royal Family!"
What? Are you saying that they are your royal family too? Well I guess I will have to share. Won't I? Let's get serious. Well I am in large part.

Lucy and Princess Amelia.

I can only imagine that Mike and Lucy would prefer that this guy from Oregon USA didn't even know who they are. Like any other couple they just wanted to be a regular family. Raising their children in the safety of their home. Sharing in the experience of seeing each child grow and develop into adulthood. They just looked forward to seeing each one achieve success individually as they grow together in the bond of family and tradition. In telling their story, Lucy says this:

“Breathing in that amazing new born smell, feeling that warm breath on your skin, counting them tiny little fingers and toes. We had just been handed our beautiful baby girl, after a complicated pregnancy, and nearly losing her during labor. Amelia was the final piece to our family. To look at her she was perfect in every way. Already having three young boys, we knew life would be busy but we couldn’t wait to start our life as a family of six.”

As stated in my last blog entry Jessica had the exact day that her daughter Nora was diagnosed etched in her memory. I think that has to be true of many families that face this journey. Lucy says it like this:

Mike with the other Super Heroes.

“On the 9th September 2014 Ollie had his first seizure.” and then later,
“The date the 13th February 2015, a day that will stay with us forever. I can remember the color of the walls, even the smell. As we sat in that small room with Ollie on his daddy’s knee we were told that our child has Battens Disease, that there is no cure and that life expectancy is between six and twelve years. Ollie was just four years old! Our world fell apart in that moment. We were told Battens Disease was so rare that they had never come across a child with it before.”

Not only would they receive this news about little doll man Ollie but their most beautiful little girl, Amelia, as well,

“For the second time our world fell apart as we learnt our beautiful princess also had Batten Disease. Amelia had only just turned two, she had been hitting all her milestones, to look at her you would never know. Walking out to our boys in the waiting room, trying to hold it together and act normal has to be one of the hardest things we have ever had to do.”

Above, Lucy's own words tell the story of the devastation that a parent feels when faced with the news that their child has Batten Disease. I have seen changes since the time I started following Ali. Clinical trials are starting to take place and they show some promise for the future. If only more attention was paid earlier. What a difference it would have made.
Both Ollie and Amelia are receiving injections of a drug called cerliponase alpha, and it is administered to children through a port directly in the brain in a 4 hour infusion every two weeks.
In an article released by the Batten Disease Support and Research Association.
(bdsra.org) the following statements are revealed:

“The data released shows that the process was generally safe and well tolerated by the children.” It also says, “When the data was further examined for the 9 children who have entered the extension part of the trial they suggested that the benefits have continued with children showing an improvement of 0.2 points at 72 weeks compared to an expected loss of 3.13 points.”

Even to this layman, that sounds very promising! When regular people do amazing things in the midst of a crisis, that catches my attention. That to me is Mike and Lucy. It is also the doctors and researchers that are in the fight to bring about a cure.

Prince Ollie the adorable.

When I look at Ollie in the present through Facebook posts, I see this most adorable little floppy doll of a young guy. He has lost his ability to speak sentences but make the cutest sounds. He is just a beautiful little man. Lucy recently posted a video of Ollie kicking a soccer ball across the room. It was taken a couple of years ago. It together with the current videos tell the story of what this disease does to children. I have grown to love that little floppy doll of a boy, long distance, just as he is but I wish he was completely whole. Not as much for me as for his parents and family. My hope and prayer is that the treatments that he is undergoing will allow him to stave off effects of Batten Disease. I want him to be with his family for a long time to come. Beautiful little Amelia, I want you to kick Batten Disease right in the mouth!!
Like with every Batten parent I observe that seeks to spread awareness while they fight this monster, I become so impressed with the courage that they display. They do it for their own children and for all others that are effected. Lucy says it like this:

I'm speechless.

“Our time now is dedicated to spending as much quality time with all four of our children whilst raising as much awareness of Battens Disease as possible.” and “The most important thing now is to make every moment count. We don’t bother with our old worries and we will continue to fight for our children and raise awareness of Battens Disease. Every day that we spend as a family of six is a gift and we will never take this for granted.”

I hate Batten Disease, and all childhood disease for that matter. However, I love the families that have been affected by dealing with it. Mike and Lucy are doing an incredible work through Ollie's Army. Not that I am anybody of any great importance but this family has my attention. Ollie and Amelia you are both little Royal Rock-stars and little heroes too!

I'll be watching because they are my Royal Family. What? They are your Royal Family too? Oh, okay, if I have to share!

Please view the following links for more information:

http://bdsra.org/biomarin-cln2-results/

http://bdsra.org/

http://olliesarmy.co.uk/

www.facebook.com/Ollies-Army-Battling-Against-Battens

Little Kaycee

Little Kaycee is another darling that is undergoing this clinical trial. She is receiving the injections that are are providing hope for herself and future little warriors like herself. Her mum, Claire Bradshaw is a really neat lady and a friend on Facebook. All my best to Kaycee and her family!!

And now, "To the one who made me aware and who changed my way of thinking. There is none like her, although there are many others.”

www.alisangels.org

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I Know Just Where You Are

2/11/2017

10 Comments

Nora's family had just received he diagnoses.

Baby Nora must have been something to behold as her parents held her after welcoming her into this world. She was born at Heywood Hospital in Gardner Massachusetts on April 21, 2005. There was only one thing keeping her parents from looking ahead to all that she could accomplish in her life. That was the fact that they were mesmerized by her tiny and most perfect appearance.

There is no bond that exists like that which is between a mother and her child. Especially between a mother and her daughter. It is apparent from pictures and Jessica's comments that her bond with Nora was no exception.

No words.

I have now heard the testimonies and comments made by many parents that are either facing a the daily struggle of caring for a child that has a rare disease or who have lost a child to such. The absolute heartache that has been told to me by the now many is heartbreaking to the reader if it is allowed to sink in. I feel that I am personally drawn into these families story and I do my best to empathize with what they face.

Jessica had to be treasuring every moment of little Nora's life as she watched her grow. I am sure that the strong bond between the two of them continued to develop as Nora reached all the normal milestones that each parent looks forward to seeing their child achieve. Each new day would bring another memory to be treasured as the entire family looked forward to a bright future for little Nora.

This, however, was all interrupted as changes started to take place. The most notable was that Nora began to have seizures. Not just one or two, but more than could be counted accurately. This would lead to an early diagnoses of Uncontrolled Seizures. Like a lot of parents that go through such an experience, the exact day becomes etched in a person's memory. Jessica remembers that day which she will never forget. June the 25th, 2009. The early diagnoses would eventually give way to the news that Nora has Infantile Batten Disease. It has no cure and the parent who receives this news is faced with the knowledge that their child will live only from age six to twelve years. There are other forms and variations of the disease but the outcome is always the same.

The center of our attention.

As somebody that doesn't know Jessica and her family personally, I can only use the examples of others who's stories I have heard in understanding what the news they received did to them at that time. How devastated they must have been to know that their most perfect little person would go through all the stages of a most dreadful childhood disease such as Battens. My heart aches for any parent that receives this kind of news.

Anybody that is a parent of a Special Needs child understands that strength of the bond that develops as a result of their child's dependency on them. However, for the parent of a child that has a rare and incurable disease it becomes even stronger. I am thinking that the constant care for the child's very survival on a daily basis and the time spent by their side only serves to increase the bond exponentially. We are not members of the Batten Disease community, but I love my son Benjamin so much! I have to tell all of you that are parents of a rare child how much I respect you. The love and respect increases with each story that I hear or read about.

Sometimes I think about what it would be like to no longer have Benjamin in our house. Benjamin always has his little space or room no matter where we live. His room is cluttered with all his favorite things. At the center of it is his computer which he uses to play his John Madden football game. He doesn't play it like a normal 26 year old person would but he does so to his satisfaction and pleasure. He is surrounded by all his favorite stuff. Magazines and books with pictures. Toy cars and school buses. New England Patriot signs, football cards, and stuffed animals he has received over the years. What would it be like if he was missing and his room was still filled with this stuff. More days than not, I walk into his room after returning from a long day at work. I will wrap both arms around him and put my face right up next to his. I tell him things like what an awesome person he is and how lucky I am to be his dad. What if he was no longer there? What if I couldn't wrap my arms around him anymore?

What would it be like to be the parent of a child with a rare incurable disease. Your days are filled with the constant care of your child. As the disease progresses the level of care needed increases. The trips to the doctors and the stays at the hospital increase. The level of home care and procedures increases but you do it because of your love for your child. Simple things like bathing become increasingly more difficult. The number of procedures required on a daily basis and the medications needed for the child's very survival go up. Your house may become more cluttered with medical equipment and perhaps the gifts from friends and well wishers fill your child's room. As a result, the bond gets stronger as you battle through each day. Your child is a little warrior and you warrior on as well. And then....

Nora, you ARE beautiful!

There is a lot of heartache in this world and life can be so cruel. It is so hard to work through this thought process. I know that God loves children and heaven is for kids such as these. God, I hate Batten Disease although I cannot fathom the heartache it produces. What the parent that faces it feels like as they and their child goes through it together.

Each child that faces Batten Disease will gain their wings. My desire, along with many others, is that this changes sooner than later. The Teal colored angel wings that each child receives symbolizes freedom. These wings symbolize freedom from a body that no longer functions as it should. Freedom to fly away to an eternity without pain or suffering.

Nora Skye Montville gained her wings on Thursday, The 2nd of February 2017. she was 12 years old. You know that means? It means she was a real warrior as well as Jessica's princess. She fought long and hard and has now gained her reward which is eternal.

Nora, you ARE beautiful and I know just where you are!

I know that Jessica misses her baby so much and it is probably more than she can process right now. I am certain that this whole experience will lead to a greater inner strength and resolve to move forward. Her bank of fond memories will be filled full. Not only with those of Nora's perfect little appearance as a preschooler but also, of every precious memory that took place as she cared for her daughter with Batten Disease. Jessica, take some deep breaths. Job well done dear girl! And I know, it is easy for me to say.

Takes your breath away!

This turned out to be an extremely difficult week for the wonderful folks that make up the Batten community. Nora was joined by both Effie and Kaitlyn. I also heard that there were two additional children that gained their wings.
Again, I cannot begin to express to all of you how much respect that I have for each family that endures such a trial by fire like Batten Disease. My hearts desire is that those of us on the outside will support you in finding a cure through greater awareness and action!

There are, of course, other childhood diseases that need more attention. These are our kids! My friend Sandra has a short bio on her Facebook page that I love. She states this about herself when she says “I love people they are my true passion. We are here for others not only ourselves.” Sandy has it right! That is why we advocate for the funding and research for the cure of childhood diseases through awareness on social media.
My only regret is that I have to work full time in an unrelated field. But then again, I do that for my Benjamin and his sweet mom!

If you have been reading my blog up until this point, you already know that a little warrior princess named Ali Vise has become very significant to my life. Her little life will always be intertwined in my consciousness with the life of a a Navy SEAL named Adam Brown. Adam gave his life defending our freedom while serving in Afghanistan. They are both hometown heroes to the people of Hot Springs Arkansas.

Our big day.

Every year around Saint Patrick’s Day Adam Brown’s family holds a 5K run in Hot Springs to honor Adam. It has turned out to be a big event and people travel from all over every year to attend.
Donya asked me about coming to the 5k in 2014 and said that other Ali’s Angels would be there. Rose and I talked it over but decided that there was no way that I could afford to go. We were in the red. My feelings were a mixture of being flattered that Donya would ask and that of being disappointed. We thought that perhaps I could make it the following year, but I could see from Donya’s posts that Ali was taking a turn for the worst. The disease was progressing and I began to become anxious. When something is important to you, you find a way. I found a way. I sold my house! It was a rental of course. Not our primary residence.

I discussed it with Rosie. I told her that we could sell the place and fly the three of us to Arkansas to meet Ali and Donya. I could take diving lessons and dive Fearless Rock with Will Stevens. If you have been reading along, you know that Fearless Rock is an underwater memorial that was built by Will and his team to honor Adam. I posed the question to Rosie and she said yes!!!
Ali was my inspiration and reason for going at that time. Diving Fearless Rock and meeting Will Stevens was the icing on the cake. I Didn't want to sit on the couch and miss out on what I thought would be the opportunity of a lifetime. These folks became so important to me and the opportunity warranted this type of action. I felt like I needed to go the extra mile in order to establish a lasting relationship that goes beyond the casual. Has it made a difference?
I hope so! I know that I will never be the same.
In almost 35 years of marriage we had never really been on a vacation, or even a real honeymoon for that matter. My dad paid for us to take the kids to Disneyland when they were younger and there were a couple of long trips to visit family, but that was it. Here it was, year 2014, and we were going to travel from Oregon to Hot Springs to meet Ali and her family, and also for me to dive Fearless Rock. I don’t think that I had ever been more excited.
Everything went as planned and the trip was on. This was Benjamin’s first airplane ride ever. We told him that he was going to ride on the bus with wings and he did an awesome job of flying. We flew 2300 miles and there we were, in Little Rock.

Like so many of Ali’s Angels, I had looked at the many pictures and videos of Ali that had been posted by Donya. I had written my own posts about the respect that I had for these people for sharing their journey with all of us. There had been many chats on Facebook and now we would get the chance to meet.

As we waited in the parking lot at Applebee’s in Hot Springs, they rolled up in the Miracle van. A van that had been donated to Donya for Ali. Donya got out and gave us a hug before opening the door to the van, and then, there she was…Princess Ali. Absolutely the prettiest little thing I had ever seen in my life.

To the one who made me aware. There is no one like her although there are many others.

Most people that read my blog know that Ali's mom Donya Catlett formed a non-profit organization named Ali's Angels Foundation after Ali gained her wings. Donya was also inspired to build a park in her community named after her Angel. The park will be called Ali's Wonderland. It will be an all-inclusive barrier-free park that will serve the people of Hot Springs, as well as people in the surrounding communities. For her actions in the community, Donya has received the Spirit of Arkansas Award. This park is much needed in the area it will be built and it will serve people in our society that are very deserving of our help. As a family, we have supported the building of Ali's Wonderland financially. We would encourage everybody that reads this blog to get involved through giving to Ali's Wonderland. You can learn more about supporting the project by clicking on the following link:

www.alisangels.com

As was previously stated in my last blog entry, there has been a GoFundMe account set up yo assist Jessica with Nora's memorial expenses. Any and everything helps. You can give by following the link bellow. Please do if you are able:

www.gofundme.com/memorial-for-nora-skye

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My Incredible Story - Revisited and Revised

2/4/2017

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My Big day!

Lets see if I can pull this off...

“I have an incredible story to tell. It’s not that I have done anything incredible or that I possess any attributes that one might consider to be incredible (I am really pretty regular). Rather, it is that I have had some life changing incredible things happen to me in the last couple of years. It is possible that it all may have never happened and it is interesting how it did.”

I have used this paragraph in my blog in previous posts but don't bother looking for it because it may not be there. Anybody that has read my blog in the past knows that my life has been impacted by reading a book titled FEARLESS and that it is possible that I may never had read it. You see I had been on a reading spree of the books that are being written about our Special Operations Warriors (I still am) when I had noticed FEARLESS sitting on the shelf at a bookstore that we frequent. I picked it up and took a look. After looking at the back cover I decided that it wasn't for me. At least at that time. Once I did read the book, I was totally in awe of a Navy SEAL, who's name was Adam Brown, and his life story. Adam was from Hot Springs Arkansas. Through the book FEARLESS and a series of Facebook pages, I would become aware of another Hot Springs Hometown hero of a much smaller variety. That would be little Ali Vise (pronounced like the word alley). The complete story in total has become what I call “My Incredible Story”, but it is not about me. No way! So this is how we get from my love for American Military Warriors to that of Kids with rare diseases and people with special needs.

What is it about following these kids? Parents share their children and all their beautiful little smiles through social media. Those of us that are sensitive to their plights become captivated by the story of their struggles, both of the children and their parents. I am at the age where people are usually grandparents, and to me there is nothing that gets my attention like these kids and the battles that come with fighting a rare disease for which there is no cure. We like to focus on positives and their pristine little features but the reality is that they face a battle daily for their very survival. The parents of these kids hope to increase awareness of the disease that affects their lives and that of their children. They hope that awareness brings attention, and attention brings funding and research. And eventually, that research will bring a cure for the disease that afflicts their little loved one.
They share because they want people to know who their child is and they don't want them to be forgotten. Parents seek empathy and support both in prayer and other outpourings of kindness. They want people to feel what they are feeling! As we continue to follow, these families become endeared to our hearts. Usually, it is just one look and we are done for. I know that was the case for me with Ali.
As I followed her on Facebook the desired to meet her increased as I saw Batten disease continue to take it's toll on her. Her mom, Donya had expressed an interest in meeting us and had hoped that I would be able to attend a 5K run held in honor of Adam Brown in which her and Ali would be present.

Our Sandy!

One of the things that I have mentioned is that friendships usually develop between fellow followers of these kids. It also happens as a result of just being part of the community that develops around a particular rare disease. Such is the case for Sandra Garrett and our friendship. Sandra is very much involved in encouraging parents of kids with rare diseases through her activities on Facebook. She also is busy spreading awareness on her page through constant sharing of posts. She has a pretty big friends list and I am sure that helps! It was through a mutual friend that we had first made contact. Once she saw my son Benjamin, it was love at first sight for her. If you know me, you know that the way to my heart is through my son Benjamin. One of the things that me and Sandy share in common is our shared love for these kids and our shared desire to spread awareness and to provide encouragement for the families that are affected. We are both very passionate about this. The other thing is that we both had a desire to meet our personal little warriors who had Batten Disease. In her case, that was little Casen from Casen's Crusade. Casen was from the state of Texas. In my case, my trip to meet Ali was coupled with diving Fearless Rock,The Adam Brown Underwater Memorial. Sandy traveled all the way from her home in New Zealand. That is amazing! We both had to do some creative monetary maneuvering to make our prospective trips happen and both our lives have been affected by these trips. My friendship with Sandy, and her relationship with us as a family, has continued to develop and she calls us “Her American Family”. We are in fact that, and I hope that will never change. Sandy was due to visit us this month but had to cancel. We look forward to the day we finally get to meet her in person. We love you Sandy! You have Rock-star status at this house.

Rosie is beautiful inside and out!

My wife Rosie (Rosemarie) is beautiful and her life is a beautiful story. You see she was removed from her home at age two and was placed in foster care. She was in a family situation that was less than desirable for her well being and safety. You see my son Benjamin's condition is genetic, or hereditary. She was helped by a very nice social worker and was brought to the home of a pastor and his family in small town Oregon. Rosie would live with these same people she calls her family and would later become adopted. She lived with these very caring folks until joining the Navy at age 18. She is one of seven siblings.

Rosie at age 4 or 5. Would you have turned her away?

Rosemarie also has a half sister from her biological mother that she will in all likelihood never know. Because of the situation, she has no medical history from her family other than the knowledge that both her biological mother and an uncle had to have had the same genetic disorder that our Benjamin has. God is Sovereign and Rosie's life is a testimony to that. Sorry! My opinion. I very much love and respect my sweet wife. She has an inner strength and beauty that is much to be desired.

Benjamin - AKA, Rico Suave'

As you may know from reading my blog, we have three boys and we are equally proud of each one of them. As a family, we have been through much, however, each one of our guys would become successful in his own way. Because of Benjamin's condition and the lack of family history we cannot know what his longevity will be or where his condition will lead him to. He is autistic and has had a seizure disorder since he was very young. They are under control with medication now but I can remember to this day rushing him to the hospital with his first seizure. I also remember the frustration of Rosie in getting him the help he needed as we tried to determine what we were dealing with. He was a patient at Shriner's hospital and their help was a large part in him learning how to walk. We saw a geneticist there who tried to find a diagnosis but she was not able to pin one down. She could only say that his condition was degenerative in nature.

One big event in Benjamin's beautiful life took place in 1997. This is when he got sick and aspirated into his lungs. This turned out to be a major medical emergency in which he was driven by ambulance to the hospital in Gilroy California. From there he was Life-flighted by helicopter to San Jose where he was placed on a very aggressive respirator. The doctor said that he could not be any sicker than he was at that time. I am so happy to be able to say that he pulled through and having him in our home has been pure joy ever since. We absolutely love our special guy and our existence revolves around him to a large degree. We accept the challenges that his life brings to ours without wavering one bit. One of the challenges is not knowing what his future will be. However, for the child that has a rare incurable disease like Battens, or say DIPG, the child's future is certain.

I would never try to compare what we have been through with that of a family who's child has a rare disease. The horror of receiving a diagnoses for your child in which you are told there is no cure and that death is certain is unimaginable for those who have not been through it. I can only do my best to put myself in their shoes and to try to think about what it is like on a daily basis to fight for your child's life. Empathy!

I am curious about something. Are you alarmed by my male attention towards your rare kids when you post about them on Facebook? As an example, when I respond with the love heart thing, lol, instead of just hitting like? I hope not!

I had, of course, followed Ali's page on Facebook very closely. I also followed some of her contemporary little warrior counterparts but I had missed one for some reason. It's like I had seen his page mentioned but didn't pay any attention. Once I did notice him I was probably thinking something like “Oh My Goodness, what an adorable little man.” I am talking about little Kane from the Facebook page called Raisin Kane for Batten Disease.

www.facebook.com/raisinkaneforbattendisease/

He is the son of Linda Crain from South Carolina. The first picture that I saw was of him sitting on a staircase wearing jean shorts and a Superman shirt. My first thought in addition to Kane's very handsome little physical appearance was that of a picture that was taken of my son Daniel when he was very young. We had just moved from San Diego back up to the Bay Area with the help of my mom and step-dad. At the time we were living at their house. It was Halloween and Daniel went out to trick or treat in a Superman outfit. When I showed the picture of Kane to my wife, she responded in exactly the same way and remembered that photograph. Although Daniel was a little different in age, the thought of both of them caused me to draw a comparison between the two boys.

Our oldest son Daniel.

The adorable Kane man!

Yep! The Awe Factor!

You see Daniel will be 33 years old in March. My son was given the opportunity to reach his full potential as an adult and indeed he has accomplished much. He is brilliant. Daniel is currently working as an IT professional in North Carolina and he is planning a visit here to Oregon this year. We are so proud of him. In comparison, Kane's life was cut way too short by a disease that shows no mercy to those it inflicts. I am certain that he would have been taught well and that he would have achieved so much in his life. That he was loved immensely by his parents is easy to see by the pictures of him and Linda together. Just like Ali and Donya, Linda and Kane together have that Awe Factor!

There are so many kids with Batten Disease. It is really not that rare. Is it? I wish that I had time to follow them all equally, as they are all so deserving of our attention. Of the ones that I show on my Facebook page consistently, I just naturally have developed little slogans for each one. Like in Ali's case it goes something like this,

“To the one who made me aware and changed my way of thinking. There is none like her, although there are many others!”

For Kane it goes like this,

“Kane is adorable is he not? He will never be forgotten and he is spreading awareness one person at a time.”

The thought is that I don't have that big of a following, but if one person sees his most adorable little face on my page then that's another person that will be aware! Kane, listen to me little buddy. Although I didn't follow you at the time and will not get to meet you in this world, you will never be forgotten. Not on my watch, not in this house!

I really don't know that much about Kane's mom Linda. I have, however, seen enough in her Facebook posts to know that she has been through a lot. If for no other reason, her son had Batten Disease. I know that facing this monster with her son has developed in Linda an inner strength that is missing in many. I can remember making a comment to one of her posts that she is a warrior to survive the ordeal. She deferred to the kids saying that they are the ones that are the warriors and that she is just a heart broken mommy. Heartbroken, yes! I can understand that. But I have to believe that Linda doesn't sweat the small stuff as much as she might have before going through what she has because of Batten Disease. She is able to battle through and warrior on. I can also see that she really cares. Linda, I am so sorry that you lost your little man and I look forward to the day that you are reunited with him. Thanks for allowing me to share about you and Kane here and on my page!

Sporting our Ali shirts!

Why do I blog? What do I want to accomplish? What is in it for me? These are all good questions. I have discovered that I love to write. Of course to do so you have to have things or people to write about. I am by nature a passionate person. By that, I mean that I have to be excited about a subject in order to write about it. I would love to write about the American Military Warrior more. They are my true heroes but they share my attention with little warriors as well. I am very passionate about kids with rare diseases and people with special needs. I love knowing that I have made someone's day. The people that I care about and admire are the ones that have rock-star status with me and I love drawing attention to them. Also, Just like with my Facebook page, I like using my writing to bring awareness to causes that I believe in. I genuinely care about the people that I blog about. So what is in it for me? For the most part, just the satisfaction of knowing that I have lifted someone up with the words I write. You know what though, I can't lie. I love it when people tell me that I have an ability to do something well. So in that sense, I am blogging for me too!

“And now, to the one who made me aware and who changed my way of thinking.”

Nora, you are beautiful!

I was so deeply saddened this last Thursday to learn that another family in the Batten community was affected by the loss of their child. Princess Nora is the daughter of Jessica Abbott Montville of Westminster Massachusetts. Nora gained her wings and our hearts go out to Jessica and her family and friends. There are no words that can really help but our family is thinking about you and your family today. Nora you are BEAUTIFUL and I know exactly where you are princess!

I am including a link to a GoFundMe account set up for her memorial in case anyone wants to help with expenses. Thanks!

https://www.gofundme.com/memorial-for-nora-skye

Our family currently supports, as we are able, the Charlotte and Gwenyth Gray Foundation for the cure of Batten Disease. We will continue to do this because we believe that they have put in place a team that can make a difference. They are able to gather resources and use them in the best possible way. What they do is for Charlotte and Gwenyth but it is also for many others. Consider joining us if you will. I know that they are not the only worthy organization involved in this effort.

www.curebatten.org

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Letter to Larry

My kind of Royalty

I Know Just Where You Are

My Incredible Story - Revisited and Revised

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